Horrible opdivo headaches
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Horrible opdivo headaches

› Forums › General Melanoma Community › Horrible opdivo headaches

  • Post
    • November 6, 2016 at 4:19 pm
    Gigi17
    Participant

    Hi everyone. I was diagnosed melanoma stage 3c. I am now in a yervoy/opdivo trial with NED. I have just finished my first cycle. Since the first session I have had a horrible headache accompanied with sore eyes, ears and neck. My Mri, eyes, and neck all came back clear? This week my blood work showed I have hyperthyroidism and ALT is above normal. I'm wondering if anyone else feels this way? I've been put on various drugs to reduce the headaches but nothing works! I have yet to be put on prednisone. My oncologists are not sure the headaches are from the trial…but the neurologist and I do. I've never had headaches or issues with my eyes, ears and neck. My lymphnodes in my neck are double there size but do not contain cancer….any thoughts?

Viewing 8 reply threads
  • Replies
      • November 6, 2016 at 5:35 pm
      Mat
      Participant

      Have they checked your pituitary gland?

      • November 6, 2016 at 5:35 pm
      Mat
      Participant

      Have they checked your pituitary gland?

        • November 6, 2016 at 5:47 pm
        Gigi17
        Participant

        The Mir report said pituitary gland looked normal

        • November 6, 2016 at 5:47 pm
        Gigi17
        Participant

        The Mir report said pituitary gland looked normal

        • November 6, 2016 at 5:48 pm
        Gigi17
        Participant

        Sorry mri

        • November 6, 2016 at 5:48 pm
        Gigi17
        Participant

        Sorry mri

        • November 6, 2016 at 5:48 pm
        Gigi17
        Participant

        Sorry mri

        • November 6, 2016 at 5:47 pm
        Gigi17
        Participant

        The Mir report said pituitary gland looked normal

      • November 6, 2016 at 5:35 pm
      Mat
      Participant

      Have they checked your pituitary gland?

      • November 6, 2016 at 6:29 pm
      debwray
      Participant

      Hi,

      Pituitary problems crop up with this treatment for a small percentage.Good news is that those that have this side effect are likely to e responders.

      Have they done cortisol levels ? Imaging results can be "very subtle" and if they don't have a reference image- that does not help. The more usual presentation seems to be low thyroid levels but have read somewhere that high can preceed low.

      Do your sore eyes include visual disturances ? if so please make sure they know.

      This discusses pituitary involvement- major presenting symptom  headache 

      http://press.endocrine.org/doi/pdf/10.1210/jc.2014-2306 Not trying to scare you – rather to encourage you to keep talking to the doctors if this does not go away.

      this has some info but is rather technical http://press.endocrine.org/doi/10.1210/jc.2012-4075

      I started my first infusion this week but so far nothing notable to report…Please keep talking to the doctors they need to know if this headache is unusual and not going away.

      Best of wishes

      Deb

       

      • November 6, 2016 at 6:29 pm
      debwray
      Participant

      Hi,

      Pituitary problems crop up with this treatment for a small percentage.Good news is that those that have this side effect are likely to e responders.

      Have they done cortisol levels ? Imaging results can be "very subtle" and if they don't have a reference image- that does not help. The more usual presentation seems to be low thyroid levels but have read somewhere that high can preceed low.

      Do your sore eyes include visual disturances ? if so please make sure they know.

      This discusses pituitary involvement- major presenting symptom  headache 

      http://press.endocrine.org/doi/pdf/10.1210/jc.2014-2306 Not trying to scare you – rather to encourage you to keep talking to the doctors if this does not go away.

      this has some info but is rather technical http://press.endocrine.org/doi/10.1210/jc.2012-4075

      I started my first infusion this week but so far nothing notable to report…Please keep talking to the doctors they need to know if this headache is unusual and not going away.

      Best of wishes

      Deb

       

      • November 6, 2016 at 6:29 pm
      debwray
      Participant

      Hi,

      Pituitary problems crop up with this treatment for a small percentage.Good news is that those that have this side effect are likely to e responders.

      Have they done cortisol levels ? Imaging results can be "very subtle" and if they don't have a reference image- that does not help. The more usual presentation seems to be low thyroid levels but have read somewhere that high can preceed low.

      Do your sore eyes include visual disturances ? if so please make sure they know.

      This discusses pituitary involvement- major presenting symptom  headache 

      http://press.endocrine.org/doi/pdf/10.1210/jc.2014-2306 Not trying to scare you – rather to encourage you to keep talking to the doctors if this does not go away.

      this has some info but is rather technical http://press.endocrine.org/doi/10.1210/jc.2012-4075

      I started my first infusion this week but so far nothing notable to report…Please keep talking to the doctors they need to know if this headache is unusual and not going away.

      Best of wishes

      Deb

       

      • November 7, 2016 at 9:51 am
      miaka618
      Participant

      Your symptoms sound like mine and it was my pituitary gland. The eye pain should be the biggest indicator as the pituitary is right behind the optic nerves. They should check all of your hormone levels including cortisol and reproductive hormones just to be sure and perhaps have a second person read the mri. 

      2 hours after I took the steroids, my headache was gone. 

      • November 7, 2016 at 9:51 am
      miaka618
      Participant

      Your symptoms sound like mine and it was my pituitary gland. The eye pain should be the biggest indicator as the pituitary is right behind the optic nerves. They should check all of your hormone levels including cortisol and reproductive hormones just to be sure and perhaps have a second person read the mri. 

      2 hours after I took the steroids, my headache was gone. 

      • November 7, 2016 at 9:51 am
      miaka618
      Participant

      Your symptoms sound like mine and it was my pituitary gland. The eye pain should be the biggest indicator as the pituitary is right behind the optic nerves. They should check all of your hormone levels including cortisol and reproductive hormones just to be sure and perhaps have a second person read the mri. 

      2 hours after I took the steroids, my headache was gone. 

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